Working out some frustrations... (unsuccessfully, I might add!)

November 10, 2021

Working out some frustrations... (unsuccessfully, I might add!)

So.... I attended the second session for the pain management group, and wound up feeling frustrated by it. We are supposed to be goal setting, which isn't too bad but the group leaders dissuaded me from setting three goals, which is what I actually need to accomplish this week. They seem to think setting one goal for one or two times a week is enough, which it is when I don't have things to do and this week i have things to do. I also felt frustrated when they used the guidelines for exercise by the Stanford University - an American study when we are in Canada...but... that wasn't my big gripe. The way the instructor explained the study is that we are to be doing resistance training comprised of 10-12 exercises three times a week, then walking or biking or gardening 5 times a week for about 45 minutes a time. Oh, and there was mention of some yoga and stretching in there too. That exercise guideline is on par with my old workout routines when I was fit,  thin, and in the gym almost every day. There is no way I could maintain that with the pain levels I have now. So...when they moved onto the guided visualisation portion (which was a body check in that I already know how to do), I skimmed the 3 workbook chapters on working out, and learned that every exercise that was suggested by the book was remedial or rehab level exercises. It was so misleading to hear the Stanford study when the reality of it is much lower than the study. It turns out that the 10-12 exercises are things like sitting in a chair and reaching down or lifting up your legs - quite basic and simple stuff, and not 10-12 sets of 3 reps in the gym doing resistance training! So I apologised for the misunderstanding, and feel better about the exercise guidelines.

That said, I am still feeling grumpy about my chronic conditions in general. Part of me is starting to wonder what would happen if I just woke up one day, cut out the sugar I am eating, and went to the gym and did a full work out. I seem to be okay hauling heavy things around, and any time I have tried weights I don't have any negative repercussions from doing them. I am starting to think I need to do an experiment soon. Part of me wonders if I just may be capable of more than I allow myself to do. but....then the old doubt creeps in and I question if I will ever be able to do anything ever again. I am so tired of letting myself down ALL the time, and I hate it even worse when I let other people down or have to cancel out on them at the last minute. I miss being able to make commitments to other people and to myself and keeping them. Just about every single time I fail to keep my word, and keeping my word means so much to so many people. I know I come across as a flake and a failure these days, and it is so very rare that I shine.

I spoke with my therapist about shining last year, and how I miss doing it and feel like I don't shine for anyone anymore, and rarely feel special. I have heard folks say that middle aged women are forgotten, and I am starting to feel that way. I just spend a lot of time alone drowning in my chronic conditions.

Last week, I told my doctor I will be asking for assisted suicide in five to ten years if things don't start to change for me.

 And I mean it. 

I can't see living another ten years with this quality of life. I am not living - I just exist slowly moving through the days waiting for time to pass by so I can sleep again, hoping that the time in between won't be painful. I am not needed anywhere, and don't matter anymore. I know some folks would miss me but I wouldn't be a big loss as I am not that involved in much anymore. I am also terrified of getting old and having to try to look after myself meanwhile my conditions get worse and worse. The idea of living in a publicly funded home is nightmarish to me - I know what those hell holes are like where people are left to rot in their filth and most every one forgets them. Who would ever come to see me? I rarely hear from folks now, and I am still around and active. Shut me up in a home and I will rot. So, no thanks, I would rather kill myself than face a future like that. I think my step dad, Derek, had an ideal death. He died when he was around 60 taking his motorbike out for his last ride the night before a buyer was to pick it up from him. He hit a pot hole, couldn't keep the bike upright, wiped out, snapped his neck, and died instantly from it. What a great way to die - a sudden painless death in the middle of doing what he wanted.

I have been struggling with suicidal thoughts a lot the last while. Intellectually I understand that they are a symptom of the C-PTSD but it doesn't make it easier to live with a voice that shouts at me a few times a day to go kill myself, or having a part of my brain that automatically slides into devising methods to kill myself and having to stop myself from thinking that way when it starts - it is bloody exhausting some days which is why some days I simply sleep so much because I am tired of always being on guard and self-aware. And it doesn't help that I am having a hard time seeing any good reasons to stick around much longer. I am not useful anywhere and no one really needs me to do anything. I feel so useless. And every time I try to step up I fail because I can't keep my word thanks to getting sick or not coping or or or...its just a bloody endless string of excuses. I miss so much being a part of something bigger than myself, I miss helping people, I miss being involved...and it is so hard to be involved or to commit to anything if I end up having to cancel stuff because I am too damned sick or in too much damned pain. I miss being reliable both for myself and for other people.

So, yes, I am angry by now. I went from having a decent career - not the top one but a career I was interested in nonetheless - to losing my career thanks to the damned chronic conditions and me having to get accommodations so now I am parked or passed on by for interesting work. No one even cares if I do much of anything! I used to have a slew of acquaintances, social friends, and a small handful of close friends. These days, I have some old friends who are scattered across Canada, the US, and the UK, and a few friends here. I spend far too much time alone, and I think I have aged out of the pagan community I used to feel a part of. The past summer was rough being left out of things. It stings to have someone walk past without a friendly smile, or to have someone else stand with their ass one foot away from my face, and snub my friendly greetings. It stings to offer help and to be turned down over and over again. It stings not to be included. And I don't even know what I did to deserve any of this - did I do anything? I wrote so much of the poor behaviour off as folks not knowing how to act with other people due to Covid but I think that is only a small part of it. There are a couple of tight cliques where I like to hang out and, when there are more folks around, it isn't so noticable. There was hardly anyone there this summer and it was painfully obvious that I don't fit with either clique. The one group is super friendly but the other group is, well, I have to be nice so won't say much. There were friendly folks, don't get me wrong... it just wasn't the same as it was pre-Covid where folks used to be warm and friendly and welcoming. Last summer it was more like you belong to an in group else you spend a lot of time alone. So... I think I am aging out. I have been thinking this for a few years, and last summer really hammered it home. So, I have no idea what I am going to do next summer and, to be honest, I don't have to worry about it right now. 

Light bulb moment - I think that is one of the things that triggered the deep depression I fell into by September. I spent a summer trying hard to be friendly to a bunch of folks and was snubbed over and over again, and it hurt and it stung and I wound up feeling old and like I just may not belong to a spot I used to call home. And I think this is partly why I am feeling anger too. And I am still sad that the community lost a couple of more good people, and if I think too much about it tears start to well up for them. 

So, I have been trying to think of the things that I love to do that doesn't involve the pagan community. I loved playing guitar and have developed calluses again... I love sewing so took a pattern making course... I love art and am thinking I may take an art course in January. It may also be a good place to make friends. There has to be something that women my age do. And I can't believe I have to try to fill the next 28 years with drivel and try to find things to keep me going. Sighs. Oh, and I also looked up an antiviolence agency with the thought of maybe doing some volunteer work but...it brings me back to my chronic conditions and being reliable. it is one thing if I miss out on a course and another thing all together if I miss out on voluteer work. And with the chronic conditions that is bound to happen. I really miss helping people and being useful. This is another huge part of why I am so depressed - I am useless to people, and almost no one wants me around. Even this summer camping, one person told me to my face that I am too high energy for them, and a second one alluded to us never being friends. It hurts me so much when people feel this way about me, when I try so hard to be freindly to everyone. I don't know whats wrong with me. I know the rhetoric that it says more about them than me but I also know that there is a pretty large element of my own behaviour there too. Ever since I was a little girl people have told me I am too much - too big, too loud, too intense, too much, too much too much... With the high number of times people have said this to me, and the number of folks who pull back from me, there has to be some truth to this, and I must be doing something wrong or off putting. Having people pat me on the back and tell me not to worry about it doesn't help either as I know that I am not going to grow or improve as a person unless I look at my own actions and behaviours. And I have been both so bloody depressed and caught up in the chronic conditions and frustrated with so much that I don't think I would really want to be my own friend either!

Summary: a psychologist diagnosed me as depressed with C-PTSD that activates at times, and she is correct; I am sad because I am isolated both by myself and by other people; I don't feel like I can offer anything anymore which I am sure is bull shit because I know I have good skills just I am unreliable; being unreliable is almost killing me; not having a decent career anymore is also almost killing me.

I have written enough now. Even I think this is a rather drab bleak writing so, if you made it this far, you must be some kind of wonder human! I am heading off.

Lou

Nope - not done - there is more. I am also struggling with my spiritual self - the self that has been there beside me for the past 45-50 years. I don't remember ever feeling so adrift spiritually as what I feel lately. I am angry about this too. I spent years learning and studying a number of different things, celebrating with people, being around other people, reading books, talking with folks, learning from mentors and guides and teachers....only to learn that much of what I have practised is likely cultural appropriation and, thus, inappropriate to practice anymore. I looked up the chakras yesterday to see if they, too, are cultural appropriation and, yep, they are. I have worked with energy centres in other people now for over 20 years, balancing energy fields, smoothing out the ruffles, cleaning out the static, removing the sticky bits, with a focus of healing and coming from a place of deep compassion for the person I was working on. Now, I am even doubting if it is okay to do the energy healing I do anymore. Mind you, I am comforted knowing that Therapeutic Touch was a modality developed by a couple of people but, now, in light of starting to learn that working with chakras can be considered cultural appropriation, I am left wondering what the roots of TT are and need to learn more. 

I also love and respect and honour people of all genders. I don't give a damn what is in someone's pants or how they want to express themselves - that is their business, not mine, and it is not for me to judge. That said, I think a part of my spirituality died when I recognized that I could no longer openly practice the biological aspect of my woman based spirituality because it excludes other women. I agree with the reasons why I can no longer practice it with other people and I don't want to hurt anyone - that is the last thing I ever want to do. And...I am sitting here writing out how much I miss following my biological rhythms when I realize just how silly this sounds considering I no longer have those rhythms to work with. Yup - my body has changed that way too. I love the wisdom that comes with age, and maybe that is what I need to start focusing on. There is only so much of "used to be" that even I can take though, and imagine it must drive other folks bananas.

I don't mind aging in so many ways. I just wish I didn't feel so invisible.

I am cut off from the heathen group I used to practice with at times. I can no longer go as I am no longer seeing the one person who runs it. I am cut off from this aspect of my spirituality too, and, even though i didn't go all the time, it was very important to me and it no longer exists for me. I am no longer invited and cannot be a part of something I have been a part of for ten years. I saw photos of them gathering and it hurt to know I cannot be a part, all because I made the mistake of believing someone and loving them. Loving that person destroyed a piece of my spirituality, it destroyed friendships, it destroyed routines and rituals, it destroyed loving other people. This hurt me so deeply that I haven't even been able to cry about it yet now, as I start to write, my face is covered with tears because I miss this part of my life so much and I so very deeply regret believing in someone and loving them. I regret so very much having been emotionally intimate and allowing something to grow with someone else.

And this leads to another piece that is a huge part of why I feel so depressed. I was discarded like a toy when my usefulness was done. My emotions were not considered. What I believed was a relationship was just a cheap thrill and was discarded when it was not useful. It was so painful being told that I was just to be a periodic sex toy when, for six and a half years, I had been assured and reassured over and over again that it was a meaningful relationship, that I was loved and cherished, and that they would be in my life forever, fighting to hold onto the relationship if it came to that. And when it came to that, they let me go with the offer that I may periodically be a sex toy for their periodic amusement. I was never a person to them - I was just used as a toy. And learning that cut me to the bone, and it cut so deep that I stopped crying. And I can't even talk about this with people because there are so many people in common so my grief is silenced and I have not faced it and I have not processed it. I miss this part of my life so much but I also know that I am more than just a sex toy to someone. I stopped playing the role of sex toy the day I got my own apartment when I was 16 years old, and I will not play that role for anyone no matter how much I love them. I am worth more. And this cut me to the bone because I believed everything I was told about how I was important to them and how they would never leave. The signs were there earlier when they refused to talk with me about a mutual friend, with me believing that it was a conversation we should be able to have because they were my partner, and more than just a friend...but the conversation never happened. and so things started to fracture.

The week before Covid, I buried a woman who was like a sister and who had been a part of my life since I was about 14 years old. She was someone I admired, respected, and looked up to, even wanting to be a bit like her at times too as I admired her so much as a kid. I had a casual short term dating relationship end then had the other gal slander me all over the place. I am so thankful for covid that I didn't have to face her right away, and decided to let that go rather than defend myself as she runs down almost all of her exes. That situation had red flags flying in my face right from the second time I saw them yet I chose to ignore then, and paid the price because now I am excluding myself from another community that I used to belong to, simply because this other gal is enmeshed in every aspect of the community so no matter where I go or what i do, she will likely be there. So that is another loss combined with more slagging. Later, I lost someone I considered to be my closest friend and who I had loved like a sister. I learned that she didn't feel the same way and, although she was fond of me, the friendship didn't mean much to her and I was cast aside when I tried to talk with her about some stuff that seemed to be brewing under the surface for awhile. I thought our friendship was strong enough and that we were both self-aware enough to work through it. Nope. I meant very little to her and the friendship I thought would always be there ended. She had been around for almost half my life, and I miss her so very much. I also lost a casual friend when I recognized that I was only a friend of convenience for her, and only worth being around when I was useful to her. And when I tried to talk about it with her, was told I was abusive - yep, abusive because I tried to talk about some mistreatment which really wasn't the worst ever treatment but, still, was something I needed to talk about because I knew it would fester and, again, thought the friendship was strong enough for that. Nope. So another friend gone. Then, after all that, the one relationship I had believed would always be there unexpectedly ended and ended in a painful manner. it wasn't even ended by either of us...it was ended by a third party. Plus, at the same time, I learned more about even more stuff that isn't my story to tell so I am not writing it out here. 

My heart has been ripped out of my chest the past year and a half, and it would have been brutal to go through even if covid wasn't going on. But, yup, there has been covid so oodles of social isolation and I am immunocompromised because of the damned chronic conditions and, even now, am terrified to spend much time with folks because i am on immunosuppresants and no one knows if the vaccine even worked on me, and if I get sick I will likely die because my immune system is so broken.

And it is, in part, broken because of the abuse I went through as a child. So I am really angry about that. As if it wasn't bad enough that I had to learn how to be a better person than what I was socialized to be as a little kid, if it wasn't bad enough that I had to spent twenty years in therapy healing from all the abuse and neglect, if it wasn't bad enough that I had to learn how to function around other people....then, when I finally get to a good and healthy place emotionally about my past, then my body started to go when all the stress from the apartments and work hit me - I simply couldn't cope and it all came out physically and I got sicker and sicker and sicker the more the stress built up until it finally all popped and my immune system basically imploded leaving me with autoimmune stuff and mysterious ailments that the doctors can't figure out.

And that leads me to one of the pieces that shoved me into the depression in September. I saw a specialist who wrote me off with fibromyalgia. Yup, that condition that most doctors consider to be imaginary, that very few doctors believe in, and almost no one treats. Yup. I have a label that actually means nothing and there is basically no treatment for it. there is treatment for my PsA as that is an actual medical condition. There is treatment for my psoriasis. Treatment for my IBS-D, the hiatal hernia, asthma, vasomotor rhinitis, and even the borderline diabetes... but not a single thing for the fibromyalgia. I was diagnosed with this earlier by a bad rheumatologist, who told me to go do tai chi and stay off the internet, that there was nothing else that could be done for me. The specialist in September actually examined me thoroughly, and listened when I answered him, yet he still discarded me with the word "fibromyalgia". Even I don't know if I believe in it for myself! I feel bad for folks I know who have that diagnosis and believe their pains but, for myself, I have a hard time believing it because there is so many other things going on, and my symptoms actually fit almost exactly with another condition but...that would require seeing another specialist.

I am fucking sick of specialists.

Let me say that again. i am fucking sick of specialists.

I am fucking sick of being sick.

Maybe I am hitting the bottom and, soon, will climb my way out again and reinvent myself into something else sparkly and wonderful and I will bounce around rarely talking about what goes on inside and somehow in the middle of all that something will click and I will wake up one day realizing that I have been happy for days and will end up wondering why I was so sad in September and October and November too.

It is almost the 3rd anniversary of Ross' death, and I am still grieving him. I am grieving Dee too. Dee I expected to pass on though because she was older...but I didn't expect to lose Ross. I always thought I would be looking after him as we got older. And he is gone. And he didn't even tell me  he had been sick. I believed his sister when she told me not to talk with him, that he didn't want me around, then I learned that she had been lying about so many things and, right now, I don't care if I ever see her again I am so angry at her. No wonder Ross seemed so confused when he saw me and came right over hugging me and telling me he loved me. I feel so awful knowing that I believed her and that I stayed away from Ross after Dee died meanwhile every fibre in my being wanted to be with him because I knew he was hurting so much, and he wound up dying alone. I can't undo this one, and there is no healing from it because he isn't here anymore so it is something I have to learn to live with and, in time, learn to accept. Right now though, it is still a raw place and I am not at peace with it.

Maybe there were too many losses in the past 3 years. Maybe it is time for me to say fuck it all and focus on rising up again, stronger and more compassionate than before with a bit of hard earned wisdom. I have to process all this loss and pain because, if I don't, it will make me become bitter as I am so very angry and sad about all the losses and I spend way too much time going over in my head how I could have done it all differently and, in the end, just keep telling myself that I must be a horrible person if so many people don't want me to be around anymore. These were people I loved and cared about who rejected me, and deemed that I was not worthy of their time or their love. Else they just died and are not there anymore. Dee and Ross were my family, and they aren't there anymore. That loss alone has been a hard one to deal with. I am mourning the relationship that was there for 6.5 years, the one I can't even acknowledge properly in public or with a lot of my casual friends, and I am mourning the loss of community that comes as a result of that relationship, knowing that I will not be welcome in certain places next summer. I am mourning the loss of the woman who was like my sister, and am feeling foolish for ever caring as much for her as I did, and wish that I knew how not to love people but I don't and so I love even though it rips me apart when people no longer want that love. And I dig inside trying to figure out what is wrong with me to make people not want to be around me, and why I was rejected. And I am left floundering in a pool of sorrow.

Holy fuck - no wonder I have been SO depressed since September. And this is on top of covid, and social isolation. I even had surgery during covid too! Yup, I had bits cut out and was patched up again and sent on my way. I can finally sneeze without peeing - yay for good surgery! And, yes, that is a happy yay :) The one positive thing in this entire 2.5 hours worth of emotional purging. I am starting to feel clearer about what I need to do. I need to grieve and to acknowledge and learn to work with the losses. I lost the folks I considered immediate family (I still have family folks - just Ross and Dee were my immediate family folks). I lost my best friend. I lost the partner I believed would always be there, and I lost his family too because I can't bring myself to ever go back there again, which means I also lost his wife as a heart friend and, instead, she is now just another person I used to know once upon a time. I lost an important part of my spiritual community with the ending of that relationship. I lost another part of my spiritual community with increased social awareness, and because I do not wish to offend people and, when I learn better, I try to do better. I am aging out of the spiritual community I thought I would always be a part of, and I haven't made plans for where to go or what to do next. I have gained multiple diagnoses in the past 3 years, and a little bit of treatment so, finally, the pain doesn't cut me to the bone most days but, instead, I am simply exhausted all the time as the medication wipes me out. Pain or exhaustion - take my pick! I lost my health. I am parked at work, and don't have the energy right now to reinvent myself into something new and to sell myself to a new employer - I simply don't have it in me to do it again. I worked so h ard and sacraficed so much for my job, believing in myself even when so many people said I couldn't do it but i did it anyways. I miss that part of myself - that drive and the burning belief that there was more to life than what I had been given, that spark that always pushed me forwards. With all the losses the past couple of years, it is hard for me to believe in anything anymore. Maybe now I have named all the sorrows I can start to stop being so angry all the time. I know that I HAVE to process these losses and the pain associated with them else I will become bitter, and I have worked so hard in my life not to be bitter. I have to let go and move on again. I have to reinvent myself, and learn to believe in me again. I am not sure what exactly I am going to do next but I do know, by naming everything here tonight, that I have started on my way to processing all the pain and hurt. I cannot let this destroy me.

I am done now.

Lou 

Sunshine always follows rain

I am attending a pain management program. It’s once a week for six weeks. I’m hoping to learn some pain management tips, and shift some of the frustration, anger, and grief I have developed from living with multiple chronic conditions. The first class was on Wednesday, and we talked about how pain is a sensation felt in the brain, and how folks can become extra sensitive to pain, and that it’s actually possible to become less sensitive to it using techniques such as distraction, meditation, visualization, breath control, and mindfulness. A couple of weeks ago, I watched a video on Central Sensitization Syndrome (CSS), and wondered if I may have become extra sensitized to pain. There is also a small e-book I read ages ago, and should revisit, that talks about how our pain threshold can decrease when a part of our body has been hurt, about how the pain sensation is a mental process. We need to have the ability to feel pain as a protective mechanism but, when things hurt all the time, it is easy to become over sensitized. I have some reading to do for our class next week, and hope to learn more about this topic. It makes sense to me. It was weird - once my pain started to decrease as the methotrexate started working, I had a hard time moving my body as I had become so accustomed to moving it in a way to protect myself. It’s been a few months, and I move a bit freer now; I can usually put pants on and not worry about falling over most days!

All this said, I’m still dealing with huge pain spikes but not quite as bad as they were last week when I went to the hospital. My own doctors office thinks I may be passing a small kidney stone that is too small to show on an ultrasound; the emerg doctor thinks its a muscle knot and blamed it on me being fat then, when I told him that the knots started when I was fit and lifting weights, he said they can be caused by too much activity too **rolls eyes at the emerg doctor** I'm on lots of meds, ball rolling multiple times a day, and using a new breath control technique that the physio personal trainer taught me yesterday. It’s an interesting technique that involves consciously breathing with the diaphragm, then moving the breath to the back of the ribs and engaging the different muscles in the back.

The pain management program also has us setting a mini goal that we have to accomplish by next Wednesday. I chose to journal about my anger, frustration, and grief that I experience from living with chronic conditions. Thinking of it, I may just start up my old blog I used years ago when I was processing some other stuff. At the time, I found it healing to write to an unknown audience. A few folks mentioned to me, at the time, that they read my blog and how it elicited different responses in folks. Yes, the more I think about it, the more I think I will return to that space.

Anyhow, I just wrote way more than I meant to - maybe this can be journal entry number one! Thanks for sticking through to the end. I won’t be struggling like this forever. I’m actually already doing better now than I was three weeks ago. I’m active again, and things are starting to shift, which is good. Thank you for your patience with me as I move through this and work on getting back to living a decent life once more. It won’t last forever, and sunshine always follows rain. Xxo

(Photo taken Oct 15, 2005 on the backroads in between London and Stratford shortly after I had learned to drive, thus being on the backroads in my old Isuzu Trooper. At that time, I was so proud that I had overcome my fear of driving and was actually doing it.)

It's just another day in November

Nov 11, 2016

I live with C-PTSD and often deal with ongoing suicidal ideation (this has been constant since I was a child and, although exhausting at times, I am not at risk of self-harm).  As some folks would know from reading my early posts, I have done a lot of self-work using art therapy, EMDR, talk therapy, inner child work, and finally ten years psychoanalysis with a complex trauma specialist.  Also, all my academics from college and university are in sociology, psychology, and social work.  I have been an advocate for non-violence, and was involved with social and political activism.  I am not a drug addict nor an alcoholic.  I am a high school drop out, and hold a full time professional job I worked hard to get.  I have been told I am an inspiration, and have had people look up to me for what I have accomplished.

In spite of having a childhood riddled with complex traumas from the far end of the spectrum, and being diagnosed with C-PTSD and having early dissociative tendencies and suicidal ideations, I have held everything together quite well for the past 20 years aside from the allergic reaction I had to Zyban about 12 years ago, and have been out of regular therapy for about 8 years.  I thought I knew myself and that my tool box held enough tools to keep myself on a fairly even keel. I grew confident, and stopped being so hyper-vigilant with myself, and let my guard down with myself, and trusted my own thoughts, emotions, and reactions.  Things were looking good.

About 4 weeks ago, I was full on triggered without expecting it, dissociated, and verbally ran down a person who was one of my main supporters to one of his friends.  He was someone who had my back and who I both respect and care about ever so much.  The shame I feel from knowing what I did and the things I said to hurt this person is immense.  I acted in the very way that goes against everything I believe in - I perpetuated an exact form of the abuse I received, and that I have worked so hard to leave behind me, which is a hard piece to accept.  This is one of the few times someone hasn't walked away from me, which is unusual, and even more so as I said some of the nastiest things I have ever said to someone.  I'm not running away either, which is also unusual as I tend to exit when things get too rough for me to handle.  My friend made a very strong suggestion for me to return to doing some self work.  I don't know what is going to happen with the friendship, and it is not my decision to make as I am the one in the wrong.

In the past 3 or 4 weeks, I have been in touch with a crisis counsellor, messaged a lot with a friend who is a therapist, reached out to a private support group of friends, and have had my first appointment with an ongoing therapist.  I have been actively dissociated in all this time, have been working at coming back to wholeness, and am making some progress.

I want to talk openly about what it is like to live with C-PTSD, to have dissociation tendencies and suicidal ideation, and to live with chronic conditions that are all a result of going through so much child abuse and trauma before I turned 16 and created a safe place to live on my own.

*****

What it is like to live with C-PTSD and to have survived a brutal childhood:

- always have to watch myself to make sure that my real past doesn't bleed into conversations with regular people as they usually don't understand or it upsets them too much to hear about it.  I am always editing my past.  People can be incredibly judgemental too.  This leads to great incongruency within myself and is one of the hardest things for me to manage as I simply want to be who and what I am all the time instead of just some of the time with safe people.

- not allowing myself to have kids because I was afraid of what kind of mother I would be, and this was in spite of hearing from therapists that I would make a great mom.

- not allowing myself to risk another long term relationship because I am afraid I don't have the resources inside to be a good, solid partner to someone.  I'm also afraid I couldn't emotionally navigate a serious break up.  I tend to stop dating people I really like and who I could have a solid relationship with because I like them too much.

- having an over-active startle reflex.  I jump and react quickly even when it is totally un-necessary.

- being hyper alert when trying to go to bed.  This is one of the hardest ones to deal with.  Just before bed, I often become hyper awake and have to get everything settled before I can go to sleep.  This is why hearing lots of noise from other apartments bothers me.  Stereos late at night are a real trigger as I was abused late at night with a stereo playing loud music.  This one has persisted in spite of trying to work with it, and causes me huge problems wherever I live.  If I live in a noisy place, I don't get much sleep.  If I don't get much sleep, I can derail emotionally.  A lot of noise can bother me at any time actually, especially if people are arguing.

- I have very few conflict management skills.  The ones I learned as a child were inappropriate and, as an adult, I have difficulty with intense emotions.  Most times, I will simply walk away when I feel too much, and sometimes I will lash out.  I am always really proud of myself when I manage conflict well as it shows that I have learned something.  I've done a lot of personal work and therapy in this area. 

- it can be hard to understand what people mean, especially if their words don't match their actions.

- having a tendency to expect more from people than what they can do or give.

- not always being aware of things that are logical to other people.  I had to learn to carry an umbrella and wear a rain coat.  I had to learn how dentists work and how to go see one.  I didn't know anything about house work, and didn't know how to cook until I was in my 30's.

- I can't always trust my own judgement for myself, which leads to a lot of over-thinking, over-analysis, and second-guessing.  It is anxiety producing.

On the road to getting answers...

Hi Folks!

I received a phone call yesterday with the message that I am booked in to see an Osteopath this January.  I have been in pain for a very long time, and think it is Psoriatic Arthritis.  And I want to dance as long as I can.

Now that is out of the way...

I turned 50 this year.  Yup, 50.  And I love it.  It is the most liberating thing that has happened in quite some time.

As a brief update, I may have sorted out some of my personal relationship issues.  I am dating, and have some steady people in my life - yayy!  I am even learning that it is okay to care and to be cared about, and am starting to ask people for help instead of trying to tackle the world all alone all the time.

I am also in progress with health.  The IBS-D is more manageable now.  I stick to a low-FODMAPs diet most of the time, allowing myself to try new foods and to have small amount of treats periodically.  I still get flare ups, especially if I am tired or stressed, but they don't normally wipe me out as badly as they did in the past.  It is easier to live with restricted food than it is to live with full-blown IBS-D.  I am so grateful to the workers at the Monosh University in AUS for the work they have done, and continue to do, in the field of IBS management and food.

Now...all the updates are out of the way.  I am feeling a strong need to write again because I had a phone call yesterday from the doctor's office telling me that I have an appointment set for January to see an Osteopath.  I am guessing that the blood work that was done a couple of weeks ago came back positive for Psoriatic Arthritis (PsA).  I was diagnosed with skin Psoriasis about 15 years ago, just after I quit smoking.  Yup, quit smoking and psoriasis showed up.  I am one of the lucky people as I it isn't too bad for me.  I get it on my scalp, ear canals, elbows, and a tiny patch in between my toes on a regular basis.  My fingernails always have tiny pits, and my toenails have more severe signs, thus are always painted.  Increase my stress levels, and scales may show up in my eyebrows, and even in a butterfly pattern on my face (checked - no lupus).  Thankfully, it hasn't shown up on my knees since my original diagnosis.  I have learned to live with it, exfoliate an awful lot, use olive oil for cleaning, and often forget it is there as being itchy somewhere is second nature to me now.  As well, many people don't realize I have it as I rarely show external signs outside of really rough elbows due to all the care I take with it.

Well...I am avoiding why I am writing.  About five years ago, I developed plantar faciitis (PF), and it almost crippled me as it lasted for 2.5 - 3 years.  Non-stop wearing of custom orthotics and orthotic-style shoes along with yoga got it to go away.  At least, at the time it was diagnosed as PF, and treated as such.  For the most part, it has gone away but still tends to show up the odd time.

Then, about 2 years ago, my hips became quite sore after spending about 10 days fire dancing every night at a festival.  Fire dancing involves a lot of hip movements, and I had a sloped camping spot so sleeping flat was impossible so I wrote off the pain to that.  Then, it never went away.  About ten months later, it was still there so I went to the doctor who sent me for physiotherapy.  I faithfully attended physio sessions and did yoga, stretches, and muscle rolling like crazy...and, although it abated, it never went away.  The pain would slow down but not stop.

There has been a drastic increase in pain over the last year or so, and I now have to stretch almost daily to keep things within a tolerable range and sometimes pop Advil like jelly beans.  Since last winter, the pain has increased to the point now that, if I actually listen to it within my body, tears run down my face because it doesn't let up or go away.  But...most days I strap on a smile and go about my business and don't say much about it because it is what it is, and I have things to do.  People notice me hobbling at work when I stand up, and I laugh and say I am old when inside I just want to hang onto something tight and cry.  Sometimes I am so exhausted from the pain that I retreat to my comfy chair and watch garbage tv, hoping the pain will slow down enough again for me to get back out to the real world.  There isn't much room for me to have self-pity in my busy life so I plug on, go a bit slower some days, and try to continue on in a normal way.

After trying to live with the high pain levels, I finally broke down with the physiotherapist a couple of months ago asking why my muscles weren't healing, and why the pain was getting worse in spite of doing all the exercises rather faithfully for the previous two years.  She didn't have an answer, and asked for me to contact my doctor for x-rays, which I had done.

The x-ray results show that my SI joint is disintegrating a bit.  The SI joint is the one that connects the hips to the spine.  Thankfully, it doesn't have a large range of motion.  The doctor sent this information to me in an email.  I kind of tottered around camping that weekend feeling a bit emotionally numb trying to digest the information that my body is actively breaking down, and pondering what the best and worst life trajectories might be.  So I came home, and started to do some research.

As mentioned up higher, I have Psoriasis.  And Psoriasis can develop into Psoriatic Arthritis (PsA).  I went to my doctor to chat about the SI joints, and the possibility that it might be PsA.  She wanted to send me directly to a sports doctor, but was quite open to sending me for testing when I explained my Psoriasis to her, and how I have been diagnosed by 3 previous doctors, if I remember correctly (I have only been with my current doctor for about 4 years, having gone to walk in clinics before that so she is missing a bit of history with me).  I am glad she is open when I request testing.  So, that leads me up to the phone call yesterday.  I still haven't heard back from the blood work but, having an appointment made with an Ostepath rather than a sports clinic makes me think my results were likely positive for PsA.

So.  That is a lot of news for me to digest.  I have only spoken to one person about the PsA this weekend, and haven't quite digested it yet.  I am slowly accepting that the pain I live with may never go away although, from what I am reading, it can quite probably be managed.  I have also discovered through reading this weekend that high levels of exhaustion are normal with PsA, which explains why most days I want to fall asleep mid-afternoon, and find it challenging to maintain my usual busy lifestyle.  The biggest thing I have been thinking all weekend, well, since I got my x-ray results actually but even more so now, is that I really want to live.

I want to dance as much as I can before my hips conk out.  I made myself dance at the festival this summer.  I couldn't keep the pace up like I used to, it was harder to swing my hips around, and I couldn't dance every night but, still, I danced.  I danced my heart out.  I danced like I may never be able to dance again.  And I want to continue dancing.  I want to dance so much that if a day ever comes that I can no longer dance with my body that I can dance in my mind and feel it in my body as if I was still actually moving.  I want to dance.

And I want to go sky diving.  Yup, I want to leap from a plane.  That much said, I may just accept leaping off a cliff instead with a bungee cord.  I am not ready to stop playing.

So.  That is what I am facing right now, and am facing most of this alone.  I am not sure what is going to happen next or how I am going to deal with it if I am told that my body will break down but I do know one thing.  I have faced a lot of challenges in my life so far, so I can face this one too because nothing has broken me down yet.  So...

Off I go to tighten my laces and snug up my boot straps because I may be in for quite the journey this year and need a good pair of shoes to do it in.

xxo
Lou

Bad reaction today.  The new foods: LF sour cream, taco shells, pineapple.  I have had problems with high fat food in the past, so it may have been the sour cream.  Pineapple often causes a sore throat but nothing today, and taco shells are not normally something I eat.

From looking at it, it may be the taco shells as they have TBHQ, which causes food to maintain the same shape in the colon instead of breaking down (study done with ramen noodles...the home made ones broke down in twenty minutes, and the commercial ramen noodles were the same shape 2 hours later).

I should try sour cream tomorrow, and keep everything else neutral.

I ate Golden Syrup tonight too.  Childhood YUM!

Day 15, low FODMAPs diet

Wow and holy padoodle.  I think the difference in food is making a difference in the way my body acts.  I have already discovered that I cannot eat celery or carrots.  Mayo is questionable, as is either popcorn or lots of butter...it may be the butter.  I have energy, and am not exhausted.  Today, I am having a flare up from 3 days worth of stress but it is nothing compared to what my usual flare up is like...no pain, no having to go to bed to deal with the following exhaustion...not even any exhaustion!

I went and saw the nutritionist at my dr's office and she modified my list from the "IBS Free at Last!" book.  A couple of items were removed, and quite a few added in.  I am still not sure about what is and is not allowed, and continue to shop from the list figuring if it is in my home I can eat it.

And, I have to say it feels rather good to be cooking for myself.  There is no getting away WITHOUT cooking....if I don't cook, I don't really eat, simple as that.  Tonight, I made blueberry lemon supposed-to-be muffins (GF flour, blueberries, lemon rind, sour cream, sugar, egg, baking powder) and had them with my home made chocolate ice cream (frozen bananas, cocoa powder, LF milk, maple syrup) - YUM!

The bonus?  I lost about 5 lbs in two weeks.

This is working, I think.....this is working.

Day 4, FODMAP elimination diet

Digestive system has been great today.  I ate closer to what I normally do only within the FODMAPs free zone.  And I didn't have any mayo.